AIDS and HIV
World AIDS Day: A prose ode to the AIDS Crisis
Telling the emotional truth about dying in the 80s
Karen Ocamb speaking at AIDS Monument presentation June 16, 2018 in West Hollywood (Photo by Troy Masters)
ORIGINALLY PUBLISHED Jun 17, 2018 (Editor’s note: On June 16, West Hollywood Mayor John Duran, Black AIDS Founder Phill Wilson, Rev. Dr. Steve Pieters and I told stories and sat on a panel with AIDS Monument artist Daniel Tobin as the Foundation for The AIDS Monument collects stories https://aidsmonument.org/ for the project. This is the story I told about the time before I became a reporter for the LGBT press when I provided emotional support for my dying friend Stephen Pender, along with my fellow 12 Steppers. – Karen Ocamb)
I don’t have HIV – but I am an AIDS survivor. I am one of millions whose whole life was changed because of AIDS – someone with PTSD and survivor’s guilt. Given my reckless behavior during the 1970s — why am I still alive when so many others are gone?
I made a promise to each one as they were slipping away – I promised to remember them. And now, 34 years later, many of their names and their faces are fading.
But I remember the time. It is seared into my soul. And I will never forget how such terrible agony forged an incredible existential movement that saved so many lives – if not their own.
And I will never forget how — for what seemed like an eternity in the 80s and 90s — this dispirit collection of despised individuals came together across race, class, and gender to create a spiritual vanguard that reflected the very best of humanity.
I know this because it was my job to witness and record it. But before that, it was my job – my honor and responsibility — to be the very best friend I could be to friends who were dying—many, too many—dying alone, rejected by their families.
I became a journalist for the gay press because I lost so many friends—about 150 when I stopped counting in 1990. I felt being a journalist was a way I could be of service, telling the stories of the unknown and the famous, equal in their desperate struggle to stay alive.
But other than shares at 12 Step meetings or the occasional op-ed, I’ve kept my personal story behind the byline, until now.
This story starts in 1980. I was a Broadcast Associate at CBS News in New York and my bosses got me clean and sober under the Employee Assistance Program.
I was 30 and I was a mess. One night I took the bus to a meeting on Ninth Avenue behind a red door. Someone pulled me aside and said this is a Men’s Stag – but they could see I was desperate and they let me stay. In fact, gay men took care of me, wanting nothing in return, which was not my usual experience in those days.
By 1983, I wanted to do something else before I got locked into the inevitable career trajectory laid out before me.
I wanted to go to LA. My girlfriend pulled out a map, put it on the bed and said, OK, close your eyes and pick a place. I closed my eyes and circled around and around and dropped my finger on the map. She laughed and said, no – try again. I’d landed on Forest Lawn. She moved the map around. I tried again – and again, Forest Lawn. What the hell! My girlfriend was getting a little freaked out. Again – closed the eyes, circle, circle, circle – Forest Lawn. The universe was trying to tell me something.
We wound up on the Sunset Strip, driving around checking “For Rent” signs. We finally found an apartment on Laurel Ave in unincorporated West Hollywood. I did one more gig for CBS News – I produced the Olympics for CBS affiliates out of TV City.
And then my world changed.
I volunteered with the West Hollywood cityhood movement and, because I wanted to be a playwright, I started taking acting classes with Salome Jens to see what actors would do with my words.
It was 1984 and gay men were coming down with this mysterious illness and disappearing. None of us knew what to do. We were terrified. Gay men were pouring into 12 Step rooms searching for help, comfort, a cure. Fairly quickly, families were formed, old grudges were forgiven – and judging someone by old standards of beauty became morally incomprehensible.
Hell – lesbians joked that we’d seen more penises, balls and butts cleaning up our friends than in all the years we pretended to be straight!
Bill LaValle took a handful of us to hospital bedsides where anonymous gay men lay dying alone in the darkness. We brought a touch of humanity, briefly uplifting the burden of grief.
We were doing spiritual triage on a battlefield with no reinforcements in sight.
An odd camaraderie develops during a deathwatch. One night, Bill LaValle and some other folks and I were sitting around the bed waiting for Don Fusco, a young jazz singer, to die. He was in a coma and we would stroke his head and squeeze his hand as we told each other stories. Then we’d fall silent.
Around 3:00am, I couldn’t stay any longer. I kissed Donnie’s forehead and told him I’d always remember him. As I let go of his hand and started to leave – he suddenly shot straight up in bed. We all gasped. I jumped back and I hurried back to my chair. ‘Ok, Ok. I’ll stay.”
The ache was so great. Churning beneath our gentle assurances was a fury at helplessly watching this amazing talent being snuffed out too soon. Bill said Donnie died shortly after I left.
My first AIDS death was Stephen Pender in 1986. A year earlier, I was having a tough time and I raised my hand at a meeting at Fairfax and Fountain and confessed that at five years clean and sober, I was feeling suicidal. This guy raised his hand and said he was nine but at five he was suicidal, too. After the meeting I thanked him and was shocked when he said he remembered me from behind the red door on Ninth Avenue.
For the next year, we did whatever we could to keep Stephen alive. There was the God Squad, who came to clean his house everyday. My HIV-positive sponsee Steve, a health nut, cooked him macrobiotic meals. We all wore masks and gloves when he had his Hickman catheter put in, lest any germ cause an infection. We’d sit on the couch and talk – a distraction from seeing the wrinkles on his jeans getting bigger and bigger as he got skinnier and skinner.
Stephen was a singer, actor and writer and very popular with the Hollywood gay boys. But at some point, they stopped coming around. I was furious. They were abandoning him. Then someone said it was because — in looking at Stephen — they were looking in the mirror at what was going to happen to them. They needed that last shred of denial. I stopped judging after that.
Stephen’s family flew in from Boston and took over his house, kicking out his roommate and claiming all his stuff. He was 35 and in denial. He couldn’t grasp that he needed a will and now the law was on their side.
Stephen was in Cedars-Sinai, too weak to fight after a horrendous bout of throwing up and diarrhea. I don’t know if his family visited him. They were Boston Catholics and while they were proud of his guest spots on TV shows like Hill Street Blues, they were ashamed that he was gay and had AIDS.
I was living off savings and spot jobs so I had free time for hospital visits. Stephan was in the Betty Ford wing – the rich alcoholic ward quietly housing people with AIDS. For some reason, he had his own room.
But hanging with Stephen wasn’t easy. He was angry. He was angry at being abandoned. He was angry at not being able to finish a play he was writing. He was really, really pissed that he was losing his voice. He’d try to sing and he could only get out a raspy few lines past the thrush in his throat and swollen tongue. And he was furious – and deeply humiliated – that as a once proud and fastidious gay man, he had lost control over all his bodily functions. He didn’t care that nobody cared.
Stephen just fumed over dying for no reason.
Sometimes he took his anger out on me over the simplest things. He’d be thirsty and ask for water and as I maneuvered the straw in the cup, he’d yell in his raspy voice, “Let me do it!” His hands were trembling and I knew he would spill it and then get mad at the spill—but I also knew he needed to feel a sense of self-control, of dignity. It was important.
On March 1, 1986, the day Stephen died, I went to Cedars but he wasn’t in his room. The nurse said he had a really bad night with projectile vomiting and they moved him to ICU. When I got there, the nurse said he was in a coma and barring a miracle, would probably die within hours.
Word quickly spread that folks should dash to Cedars to say their goodbyes. For two seconds, I struggled with whether I should stay or go. There was no clue how long Stephen would hang on.
But then I thought of how Stephen had saved me – twice – the first time behind the red door, the second at Fairfax and Fountain. I stayed. I owed him. I had a quick shiver remembering how I waved goodbye to my friends on the airport tarmac as they headed off to Vietnam. I sensed that Stephen was just the first long AIDS goodbye.
I sat with him throughout the day as friends came and went, all of us assuming Stephen could hear us in his coma. One group brought a cassette tape recorder and played some of Stephen’s favorite music. Some of the old Hollywood cute guys came too, looking gaunt and frail. I left the room to give them privacy.
In the in-between time, I read to Stephen or talked to him, or just sat quietly, my hand on his clammy arm or cooling his brow. At one point I had a moment of panic: I bit my nails too deeply and had a slight open wound. What if some of Stephen’s sweat got in there—could I catch HIV? I got up, washed my hands and looked at my dying friend. He was worth the risk. I got a Band Aid and resumed my post.
Late in the night, a small group of black singers came in. They held hands, prayed and quietly sang over him. I forgot how they said they knew him. It didn’t matter. We all felt that he was cradled by the music.
Around midnight, Stephen’s secret young lover came in and the whole atmosphere, the very air in the room changed. It was filled with this spirit of love, a hue of light gold. Something was happening, as if Stephen knew Michael was there. I left them alone.
Stephen’s secret lover apparently had not been cool enough for his other friends. Paul Monette would later say that love in the age of AIDS was like dancing in a minefield. Until now – these two had been dancing in the dark.
When Michael came out of Stephen’s room, he was choked up but at peace. He thanked me for staying, then handed me a paperback copy of “As Is.” Stephen had given me the play, signed by his friend Bill Hoffman – but I’d left it at Stephen’s house, superstitiously fearing that if I took it home, I might hasten his death. We had lots of superstitions and magical thinking in those days.
When I went back into his room, only a hint of the golden glow remained. Stephen had waited for Michael and now it was time to let go.
Suddenly, Stephen’s breathing changed dramatically. I rushed out to get the nurse. “Something’s happening. Come quickly.” The nurse rushed back with me, took his vitals and cupped his head.
“Do something!” I said, panicking. “Isn’t this what you want? He’s dying. If I do something it will only prolong the inevitable.”
I stepped back, overwhelmed. As someone who’s struggled against suicide since I was a teenager – in the face of death, I had just experienced this full-on flush of choosing life.
I calmed down and returned to Stephen’s side, stroking his forearm as his death rattle nudged aside the silence. I told him it was OK to let go. I told him that the warm golden light awaited him on the other side. I told him his friends were waiting there, too. He was not alone.
That night, I was afraid to go to sleep. I kept replaying Stephen’s death over and over until suddenly I realized that his death was like the Third Step: Stephen made a decision to turn his will and his life over to the care of God, as he understood God. He surrendered.
I felt more at peace. I closed my eyes and started to doze off – and then Stephen’s spirit visited me. He was in his hospital bed and he sat up and gave me a big ‘Thank You’ hug.
Stephen’s friends produced a memorial for him at Fairfax and Fountain, after which they planted a small ficus tree outside the church’s side door on Fountain Avenue. It’s still there, a mighty tree now, watered and fed by years of 12 Step coffee grounds and laughter wafting up from intimate conversations.
I think of Stephen every time I pass by. And I see a parade of others, too. The flash of a face tells a whole story. A story like this one – I’m sure you have your flashes and stories, too.
The AIDS crisis was our holocaust. It is our duty and our honor to never forget.
AIDS and HIV
Community is the cure: AIDS Walk LA returns to fight HIV and funding cuts
AIDS Walk Los Angeles returns to West Hollywood on October 12 with the theme ‘Community Is the Cure,’ highlighting the vital role of unity, radical community action, and advocacy in the fight against HIV/AIDS, stigma, and government funding cuts
APLA Health, a nonprofit providing HIV care, prevention, and sexual health services, announced the return of AIDS Walk Los Angeles on Sunday, October 12, 2025, starting from West Hollywood Park. This year’s theme, “Community Is the Cure,” emphasizes the role of unity in advancing progress against HIV/AIDS and supporting those affected.
Walk day will feature a live performance from RuPaul’s Drag Race star Heidi N Closet, DJ sets, and community booths. Following the celebration, walkers will make their way through the streets of West Hollywood.
“This event was born out of urgency, and it’s just as relevant today,” said Craig E. Thompson, CEO of APLA Health. “We’ve made incredible progress in the fight against HIV, but that progress is under direct threat from funding cuts and political attacks. Now is the time to show that we won’t be silenced or set back.”
Since its inception forty years ago, AIDS Walk Los Angeles has grown into one of the largest HIV/AIDS fundraising events in the world, raising nearly $100 million. Proceeds fund APLA Health’s services, including HIV specialty care, sexual health services, food and nutrition support, and housing assistance.
“The HIV/AIDS epidemic has always shown us that progress happens when people come together, when patients, neighbors, families, activists, and health providers stand shoulder to shoulder. Today, with funding under attack and stigma resurfacing, unity is not optional. ‘Community Is the Cure’ is a reminder that science alone isn’t enough. We need collective willpower, advocacy, and solidarity to ensure everyone has access to the care and dignity they deserve,” Thompson said.
Cuts to Medicaid, the Ryan White Program, and prevention funding threaten access to medications, housing assistance, and food security. “Here in Los Angeles, where tens of thousands rely on these programs, even modest reductions can push people back into crisis. AIDS Walk Los Angeles helps fill some of those gaps, but philanthropy cannot fully replace the government’s responsibility,” Thompson explained.
Communities of color, the medically underserved, people living in poverty, and those experiencing homelessness are disproportionately affected. “The barriers aren’t medical. They’re structural: stigma, lack of insurance, unstable housing, and underfunded safety-net services. The administration is underinvesting in the very programs designed to break down these barriers. Until that changes, inequities in HIV prevention and care will persist,” he said.
Funds raised by the walk provide housing, groceries, case management, and access to medical care. Thompson shared the story of one patient who had lost housing and had to choose between medication and meals. “Through AIDS Walk–funded programs, we were able to connect him to stable housing, consistent medical care, and our food pantry. Today, he is virally suppressed, working again, and mentoring others who are newly diagnosed with HIV. Stories like his are common, and they remind us that cuts aren’t just numbers on a spreadsheet, they’re setbacks in real people’s lives.”
Beyond fundraising, AIDS Walk LA is a platform for advocacy. “When thousands of people flood the streets of West Hollywood, it’s a visible reminder to our community that HIV/AIDS has not gone away and to policymakers that their decisions have life-or-death consequences. The walk puts pressure on elected officials to fund programs, fight stigma, and stand up for people affected by HIV,” Thompson said.
He urged the public to take action beyond walking and donating. “Call your elected officials. Demand that HIV services remain fully funded. Show up for community hearings. Support housing initiatives. Share facts on social media to counter stigma. And, importantly, talk. Without continued conversation about HIV/AIDS and sexual health, we jeopardize the incredible advancements we’ve made in HIV care and prevention.”
Thompson also framed the walk as part of a broader activist approach. “Radical action today means showing up for one another in tangible ways, housing someone, feeding someone, advocating for someone, and refusing to accept policies that erase people’s humanity. As our theme emphasizes, when politicians fail us, COMMUNITY IS THE CURE. For participants in AIDS Walk LA, it means recognizing that the walk is just the beginning. Each person can be a messenger, an advocate, and an ally in daily life. When we work together to get people connected to support services, the collective action is radical because it insists on care and dignity in a time when those values are under attack.”
“Activism ensures policymakers cannot quietly dismantle programs. Community solidarity means that no one gets left behind. Public pressure creates accountability. When thousands unite at AIDS Walk LA, it demonstrates the broad mandate to keep fighting until HIV is no longer a public health crisis. That unity is as important as any medical breakthrough,” Thompson concluded.
For more information on AIDS Walk Los Angeles and how to register, visit https://AIDSWALK.LA.
AIDS and HIV
“If not now, when?” Journalist and activist Karl Schmid is reshaping how we talk about HIV/AIDS
The Blade sits down with the award-winning host to talk about stigma and his latest initiative – taking HIV education onto the runway
Karl Schmid has long been a staple in queer news and media. Hailing from Australia, Schmid grew accustomed to the limelight from a young age, and eventually made a successful transition into American network television through his work on red carpets for ABC.
In 2018, he would be thrust into the spotlight for a different reason. Despite repeated warnings from professional acquaintances, Schmid came out as HIV positive to share his story, wear down stigmas, and to educate people about important and misunderstood science like the concept of undetectable equals untransmittable.
And so, Schmid would grow accustomed to renewal. In 2019, he launched Plus Life Media, a platform that shares HIV resources, education, and stories of resilience from people living with HIV/AIDS. He was part of the team behind the Emmy-nominated short documentary, Marty’s Place: Where Hope Lives: an intimate look into a housing cooperative created in the 1990s to support people with HIV/AIDS. Late last week, he flew to New York for the U.S. debut of his latest initiative: HIV Unwrapped. The project pairs researchers and scientists in HIV studies with fashion design students, culminating in a runway show that features bold reimaginings and interpretations of crucial science.
The Blade spoke with Karl about the cross-pollination in his own life and career, and how his latest effort is shaping the way he blends activism and media to reinvigorate conversations around HIV/AIDS.
HIV Unwrapped feels like a really interesting pivot into a different kind of modality and platform for you. Can you tell me more about the initiative and how it fits into your legacy of activism and work?
Well, HIV Unwrapped came out of Australia and this wonderful activist named Brent Allan, who I’m good friends with. And Brent had been at, I think, the WorldPride, or something that was happening in Australia, and there was an exhibition where they paired some engineers and science people of varying professions with a fashion designer to try and illustrate their work.
And he thought, “Wow, what a great way to maybe try and interpret HIV science and reignite the conversation around HIV.” So it started in Melbourne, Australia, and it was successful there. And then they did a version in the UK earlier this year. And then in July for the International AIDS Conference that took place in Kigali, in Rwanda, they did a version.
And that’s kind of where I stepped in. I think with HIV Unwrapped, you’re drawn into the fashion first — and then the science comes. It’s just a really unique and different way of reframing the conversation about HIV. But beyond that, it’s also working with fashion students, young people, and to see them become so invested in HIV science. That’s what gets me the most excited. Because you’re opening a whole new world to a person who doesn’t maybe really think about HIV all that much, and now they’ve learned all this amazing stuff. Suddenly you’ve got a whole new bunch of people talking about HIV in exciting and fresh ways, and they’re telling their friends and they’re having conversations about it.
You’re trying to create different entry points for people to not only talk about the science behind HIV and AIDS, but also how we can reinterpret it in original and visually interesting ways.
I mean, look, you’ve got the House Appropriations Committee willing to advance this “Big Beautiful Bill” that slashes $2 billion in HIV funding in this country, and as someone living with HIV, you keep going, “Why would they do that? Why? We are so close to ending HIV.” All of a sudden, we’ve stopped funding research, and we’re stopping this, and I’m just like, “Why?”
Now more than ever, we’ve got people and politicians and government and a large part of the United States who think, “Oh yeah, HIV isn’t a thing anymore. It’s not important.” Well, it is still a thing. It is still important, and HIV Unwrapped is a way to be creative and open new avenues of dialogue.
A friend of mine sent me a handwritten note the other day. This is in Texas. One of his roommates wrote a handwritten note to another roommate, saying, “Oh, just so you know, ‘such and such’ has AIDS. So I’d be scrubbing the shower if I were you after he uses it. I personally have decided to go and shower at the gym.” And this is a person in their 30s, so we’re still having these dumb conversations from 1984.
That’s why I do what I do with Plus Life, and that’s why I’m like, “Wow, HIV Unwrapped is another tool in our toolbox we can use.” And I guess our hope is really that scientists will see this across the country and around the world and go, “Well, that is a really cool way to explain my science and make it accessible,” and want to engage in future projects like this.
How queer communities are represented in the media can leave deep imprints. I was watching an older interview you did where you recall this HIV ad you saw in a movie theater as a kid. The Grim Reaper’s there, and it’s creepy and sinister. It seems like we’ve moved away from that kind of imagery — but it doesn’t feel like we’ve necessarily come to a much better understanding of HIV/AIDS. Where do you think we’re at now in terms of representation?
The fact that, to this day, I can tell you where I was, what the movie was, that it was a Saturday, which cinema it was in, and I was a seven year old kid. It gives you an idea of how burned into my memory that is. And, I agree. I think we’ve moved away largely from the fear tactics, but we’ve stopped talking about it. I’d like to think that we’ve gotten better in representing people living with HIV, on television and film, as just people living with HIV. Where HIV doesn’t become the central storyline, and it’s not a doom and gloom, “woe is me” story. It’s just part of who they are.
But we sort of dance around anything that’s to do with our bodies or sex or sexuality, because it makes us uncomfortable. And so when I pitch stories to ABC and other networks, and even, quite frankly, trying to get press to cover HIV Unwrapped: we get passed on. People don’t want to talk to us because HIV isn’t sexy. As long as we keep doing that and having that reaction — if we don’t talk about it — we don’t get to a place where we can be comfortable with it.
Since I came out about my status all those years ago, my focus has been trying to normalize the conversation. That’s how we grow, and that’s how we learn — whether it’s HIV, whether it’s politics, whether it’s anything. But if we don’t talk about it, and we sort of pretend it doesn’t exist, and then we cut funding for it, and we sort of sweep it under the rug: it ain’t going to go anywhere.
Women of color, Black and brown women, have the highest infection rates in the United States. In the south those rates keep going up and up and up, and now we’re cutting funding to testing and to counseling and to services. I’m really worried that we will end up back with AIDS wards in hospitals again, and there’s no need for it.
To bring it back to HIV Unwrapped, that’s why, if I can come up and work with an amazing group of people to tell stories and to have conversations in fresh ways, then I’m going to keep doing it — whether it’s HIV Unwrapped, whether it’s what I do on Plus Life, whether it’s a television show or whatever crazy thing I come up with next.
It feels like there’s so much watering-down in terms of conversations around sexual health, HIV and AIDS. What is the resistance that you’ve faced, and how has that resistance changed over the years?
I’ve heard, “I think what you’re doing is great. It’s just not the right time to tell the story.” Well, when is the right time to tell the story? I think so many people in America think HIV doesn’t affect them. And the reality is very different. HIV affects everybody. If not now, when? People are still dying in this country. People are afraid to get tested, and they’re living in shame. And they’re hiding what’s wrong with them because of the stigma — and that just shouldn’t be happening.
I’ve said this a million times too. You know, HIV and AIDS doesn’t kill you. That’s not what’s going to put me in the grave. But it’s the stigma. It’s the bigoted, out-of-date opinions of Congress and politicians and public figures and uneducated people who just think this is somehow some deviant, dirty “sex disease” or drug disease, and those of us who get it deserve it. And you know, television networks, especially, are in the business of making money. And to do that, they sell advertising, and so they’re worried that advertisers will turn off if you talk about this kind of stuff.
And I think it’s maybe a little bit the opposite. I think if you can find, again, engaging and interesting ways to have real conversations, I’ve certainly found that you get a very vast and wide audience of people who will chime in and may have an opinion. And again, our opinions may differ, and that’s okay, but, but as long as we’re having the conversation, the more you say it, the less scary it is.
Almost 20 years after you were first diagnosed with HIV, do you see yourself pivoting now to work more on activism? Is that something you’re trying to focus more on now at this point of your career?
I will say that I’m incredibly fortunate to have worked for as many years as I have in broadcast, and I’ve done some really amazing things, and had some phenomenal opportunities going to the Oscars and doing all those red carpets and celebrity interviews all over the world. They’re all valuable experiences that I’ve been able to build upon. But I will say that in the last sort of two years, especially, my focus has become more about Plus Life and doing these kinds of stories and these kinds of initiatives.
I am fascinated by people. I think to be a decent journalist or broadcaster, you have to have that innate curiosity. And I am deeply curious about people and people’s behavior and where they come from, and what kind of homes they grew up in, what their friends are like. It’s incredibly satisfying to me. Do I miss being on regular, scheduled programming and television? Sure. It was a fantastic platform, and there’s nothing quite like the thrill of live television for me, and that’s why I loved being in news and entertainment news.
I think as I sort of get older, and I’m no longer the young kid on the block, and I’m not so nimble with my thumbs and my forefingers when it comes to putting stuff up on social media and Tik Tok and all of that…If I’ve got an opportunity to really hone in on the stuff that I do with Plus Life, there’s nothing more rewarding than that, right?
A behind-the-scenes documentary of the U.S. debut of HIV Unwrapped will be available to stream on November 30th, just before World AIDS Day.
AIDS and HIV
Assemblymembers urge Governor Newsom to sign “lifeline” bill for HIV medication
AB 554 amends existing law that restricts access to PrEP medication
On September 10, Assembly Bill (AB) 554, or the PrEPARE Act (Protecting Rights, Expanding Prevention, and Advancing Reimbursement for Equity Act), was passed with a majority vote by the California State Assembly and Senate. Today, the bill’s leaders are urging Governor Newsom to sign it into law.
“With a powerful coalition behind AB 554, we were able to get this bill through the process swiftly, and are hopeful that the Governor will see the need for the LGBTQ+ community,” Los Angeles Assemblymember Mark Gonzalez, one of the bill’s co-authors, told the Blade.
AB 554 was first introduced in February, and was penned by Assemblymember Gonzalez and San Francisco Assemblymember Matt Haney. It was formed to amend existing laws around health insurance coverage that currently restrict access to certain antiretroviral drugs, or HIV preventative medicine like PrEP and PEP, and to ease difficulties community clinics face in administering these medications and receiving reimbursement. The bill will also require health care plans to cover FDA-approved HIV medication without enforcing prior authorization or step therapy.
For Gonzales and the bill’s supporters, AB 554 is about boosting access to various forms of effective HIV preventative medicine and providing a safeguard for people as the state of HIV research and treatment enters unsteady ground. This all comes in the midst of the debate around the House Committee on Appropriations’s 2026 Departments of Labor, Health and Human Services, and Education, and Related Agencies funding bill, which proposes $1.7 billion in cuts to domestic HIV prevention and research efforts, as well as programs that provide care for people living with HIV/AIDS — particularly, low-income people of color.
Assemblymember Gonzalez stated to the Blade that this is a “stark reminder that this epidemic still hits our communities of color the hardest,” and wants to address this by evolving and updating laws to reflect local needs. He is hopeful about the Governor’s impending response, and stated that the bill is “not just a policy; it is a lifeline.”
“It’s about giving people real choices, equipping small clinics with the tools they need to protect lives,” Gonzalez continued, “and ensuring that California continues to put public health over politics.”
AIDS and HIV
Local organization aims to support and assist Black LGBTQ+ community
REACH LA is stepping up their mission amid hostile administration
REACH LA, a Los Angeles-based nonprofit organization aimed at working with youth of color, is stepping up their prevention resources during Black History Month to support the LGBTQ+ community of color.
Though today is National Black HIV/AIDS Awareness Day, REACH LA works year-round to provide resources to their community members.
This month, the organization is amplifying its mission to support Black LGBTQ+ youth by offering free HIV testing and care throughout February, offering a $25 gift card as incentive to get tested. This and all of REACH LA’s efforts are geared toward assisting the marginalized Black and Latin American communities by reducing stigma, increasing education and assisting community members with resources.
The QTBIPOC community is especially vulnerable to political and personal attacks. As we head into the next four years under a hostile administration whose goal is to erase queer and trans people, there will be continued attacks on federal funding and on any other front possible.
“This year, it is especially vital, more than ever, to amplify and commemorate National Black HIV/AIDS Awareness Day. At REACH LA, we are currently engaging with individuals and partnerships while navigating through dire and uncertain times where HIV/AIDS awareness prevention efforts, access, and visibility have been under attack and restricted,” said Jeremiah Givens, chief marketing and communications officer at REACH LA.
It is important to spotlight the intersection between health equity, Black LGBTQ+ empowerment and community-based solutions during Black History Month and every other month throughout the year and especially during this particularly vulnerable time.
As one of eight CDC PACT Program Partners, REACH LA celebrates National Black HIV/AIDS Awareness Day with a Positive Living Campaign in collaboration with the CDC’s Let’s Stop HIV Together initiative. The campaign highlights the resilience of individuals living with HIV and works to raise awareness and foster community support.
To learn more about resources, visit their website or stop in for testing, support and other resources. The organization’s doors are open Monday through Friday, from 11 AM to 7 PM for free, on-site HIV testing and assistance with accessing PREP and PEP, linkage to care and free mental health therapy.
Over 300 people gathered last Monday to commemorate World AIDS Day in an event hosted by Bienestar Human Services. The non-profit focuses on identifying and addressing emerging health issues faced by Latinx and Lesbian, Gay, Bisexual, Trans Queer and more (LGBTQ+) populations.
The main objective of the annual event was to light a candle to honor those who passed away due to Human Immunodeficiency Virus (HIV) and celebrate those who, despite the condition, keep going.
HIV is the virus that causes Acquired Immune Deficiency Syndrome (AIDS). Once you have HIV, the virus stays in the body for life, and while there is no cure. There is, however, medicine that can help people stay healthy, states Planned Parenthood. HIV destroys the cells that protect the human body from infections. If a person doesn’t have enough of these CD4 or T cells, the body can’t fight off infections as normal. This damage can lead to AIDS, which is the most serious stage of HIV, and it leads to death over time.
In the U.S., there are about 1.3 million people newly infected with HIV in 2023 and 39.9 million living with HIV, according to the Joint United Nations Programme on HIV/AIDS.
Living with HIV for decades
Among the participants at the event at the Ukrainian Culture Center on Melrose in East Hollywood was Marcela, a transgender woman who was diagnosed HIV positive 33 years ago. She said when she learned about her diagnosis, she was so depressed she tried to commit suicide. She ended up at the hospital, and after getting better, she heard about an organization that was helping people with health issues such as hers.
“Since then, I learned to live with this condition because it is not an illness; it’s a condition,” she said.
Bienestar celebrated the World AIDS Day on December 2, 2024. (Courtesy of Bienestar)
Marcela, who didn’t provide her last name, said she not only found a new way of living with HIV but also found an extended family at Bienestar. They have guided her on how to receive the proper treatment and medicines, to be part of a support group and even to pay her rent when she needed it the most.
The 64-year-old woman doesn’t have any family members in the United States. She said five years ago, her husband passed away of pneumonia. She was living alone in Long Beach and got behind her payments during the pandemic. She said Bienestar helped her apply for a grant of over $20,000 that secured the payment for her rent, and now she is debt-free.
“I’m extremely grateful to them and all the help they provide,” she said.
Working for the community
This year, Bienestar is celebrating 35 years of serving the LGBTQ+ community. Among the many programs they offer is the Support Group for Transgender Women, which Marcela belongs to.
Mia Perez, the support group manager, said 15 to 20 members attend the group every Friday from 3 to 5 p.m. They talk about their feelings, share experiences, and plan and participate in social events.
Perez said one of the participants’ biggest concerns is accepting reality once they have been diagnosed. “However, with all these new treatments people that are HIV positive can have a normal relationship with someone who doesn’t have HIV. It’s all about getting informed,” said Perez.
Other concerns include what will happen to them once the new presidential administration takes office since they have plans to deport immigrants and many of the transgender women are immigrants.
“That’s why we are trying to get in contact with an immigration attorney or an organization so they can keep them informed of their rights,” said Perez.
Bienestar events, like World AIDS Day, help those affected create a stronger community, and they realize the recognition is not just for those who are HIV positive but also for their families and friends.
Marcela said when she is feeling down or bored at home, all she has to do is go to Bienestar and the people there always give her a warm welcome.
“They give me coffee, they offer me lunch. Being there is like being at home,” she said.
AIDS and HIV
New monument in West Hollywood will honor lives lost to AIDS
In 1985, WeHo sponsored one of the first awareness campaigns in the country, nationally and globally becoming a model city for the response to the epidemic
December is AIDS/HIV awareness month and this year West Hollywood is honoring the lives lost, by breaking ground on a project in West Hollywood Park that has been in the works since 2012.
Members of Hollywood’s City Council joined representatives from the Foundation of AIDS Monument to announce the commencement of the construction of STORIES: The AIDS Monument, which will memorialize 32 million lives lost. This monument, created by artist Daniel Tobin, will represent the rich history of Los Angeles where many of those afflicted with HIV/AIDS lived out their final days in support of their community.
Tobin is a co-founder and creative director of Urban Art Projects, which creates public art programs that humanize cities by embedding creativity into local communities.
The motto for the monument is posted on the website announcing the project.
“The AIDS Monument:
REMEMBERS those we lost, those who survived, the protests and vigils, the caregivers.
CELEBRATES those who step up when others step away.
EDUCATES future generations through lessons learned.”
The monument will feature a plaza with a donor wall, vertical bronze ‘traces’ with narrative text, integrated lighting resembling a candlelight vigil, and a podium facing North San Vicente Blvd.
World AIDS Day, which just passed, is on December 1st since the World Health Organization declared it an international day for global health in 1988 to honor the lives lost to HIV/AIDS.
The Foundation for the AIDS monument aims to chronicle the epidemic to be preserved for younger generations to learn the history and memorialize the voices that arose during this time.
The HIV/AIDS epidemic particularly affected people in Hollywood during the onset of the epidemic in the 1980s. The epidemic caused a devastatingly high number of deaths in the city. The city then became one of the first government entities to provide social service grants to local AIDS and HIV organizations.
In 1985, the city sponsored one of the first awareness campaigns in the country, nationally and globally becoming a model city for the response to the epidemic.
Earlier this year, the U.S. Centers for Disease Control and Prevention released the theme for World AIDS Day, ‘Collective Action: Sustain and Accelerate HIV Progress.’
The city of West Hollywood continues to strive to become a HIV Zero city with its current implementation of HIV Zero Initiative. The initiative embraces a vision to “Get to Zero” on many fronts: zero new infections, zero progression of HIV to AIDS, zero discrimination and zero stigma.
Along with the initiative and the new AIDS monument, the city also provides ongoing support and programming through events for World AIDS Day and the annual AIDS Memorial Walk in partnership with the Alliance for Housing and Healing.
For more information, please visit www.weho.org/services/human-services/hiv-aids-resources.
AIDS and HIV
National Latino AIDS Awareness Day: Breaking down stigma, silence and silos
FLAS provides HIV and STD education
When Elia Chino, Founder and Executive Director of the Fundacion Latinoamericana De Acción Social (FLAS) Inc., initially approached major HIV/AIDS agencies in Houston, Texas for support in starting an organization tailored specifically to reaching Latino populations, she was met with confusion.
“Why do you want to start a separate organization?” they asked. “We’re here!”
Chino remembers her frustration. “They didn’t understand,” she said. “Our brothers and sisters were dying, and the community needed services that they couldn’t provide.”
Indeed, in the 1990s, barriers to HIV care and treatment for Latino populations were markedly different from those faced by other populations. Information about the HIV epidemic was largely in English, and inaccessible to many individuals who had immigrated from indigenous Latin American communities and never learned to read and write in their native language, let alone English. When they were able to access treatment, Latino individuals often faced mistreatment at primary care facilities due to a lack of culturally competent care.
Perhaps most challenging was the culture of silence. Many Latino immigrants living with HIV in the United States fled homophobia, transphobia and stigma in their home countries, and were still grappling with lasting shame and guilt. Despite many people dying, there was little open discussion or education about the cause. In fact, Chino didn’t even know that the HIV epidemic took the lives of some of her best friends until speaking with their families years later.
“No one was talking about their diagnosis,” says Chino. “People had come to the United States for freedom, but still weren’t ready to talk about who they were. There was a real atmosphere of stigma, taboo, misinformation and fear.”
At the time, Chino was volunteering at a hospital serving communities without insurance. The fourth, fifth and sixth floors were all dedicated to treating people with HIV. Chino began educating herself on this crisis while she volunteered at the hospital, and founded FLAS in 1994 after discovering that the majority of HIV prevention efforts were not reaching Latino individuals.
In the beginning, without support from other organizations in the area or resources to expand, Chino was a one-woman show, conducting outreach in clubs, cantinas and bars by herself. She hadn’t anticipated the barriers she’d face as a member of the LGBTQ+ community and an immigrant. Horrible discrimination, a language barrier and intense HIV stigma in the communities she was working in made the work challenging, but also emphasized the necessity of what she was doing.
Over time, with support and funding from organizations like Gilead Sciences, FLAS has been able to expand its services from solely HIV prevention to include HIV testing, behavioral health services, housing and social services assistance, support groups and a food pantry. The organization has started hosting educational events everywhere from churches to street corners, raising awareness about HIV in the Houston community. Chino also started collaborating with the consulate of Mexico to help newcomers navigate U.S. health systems and services when they arrive in the United States. Next year, the organization will start offering mobile HIV testing clinics for communities in need.
Since its launch, FLAS has been able to expand its initial focus to address the holistic drivers of this crisis, moving beyond medical determinants of health to tackle the social and structural barriers that perpetuate the HIV epidemic and prevent Latino populations from accessing comprehensive treatment.
“Everyone keeps telling Latino individuals to get tested, but this does nothing unless you actually incentivize people to do so,” says Chino. “People have to go to work. They have to pay their rent. They have to buy food. Many can’t afford to lose their salary and spend a full day coming in to do a test or get treatment. We have to make it easier to access HIV prevention and treatment, and we have to provide incentives.”
This year marked FLAS’s 30th anniversary, which the organization celebrated with a gala in August. They have made a huge impact in Houston since their launch – providing HIV and STD education to over 500,000 Latino people, distributing over 20,000 HIV tests, referring over 40,000 people for social services and hosting over 6,000 educational events and health fairs in English and Spanish. However, many of the challenges for HIV prevention and treatment for Latino populations remain.
“We have over 30,000 individuals living with HIV in Houston, yet when we ask for people to talk about their status, no one comes forward to tell their stories. HIV is a chronic disease, but stigmatization is still so strong in the Latino community,” says Chino. “You can say you have cancer, high blood pressure, diabetes, whatever – but nobody says I have HIV. There is still so much work to do.”
As a testament to their important programming, FLAS is a recipient of funding through Gilead Sciences’ TRANScend® Community Impact Fund, a program aimed at empowering Trans-led organizations working to improve the safety, health and wellness of the Transgender community. Since its inception in 2019, TRANScend has awarded more than $9.2 million in grants to 26 community organizations across 15 U.S. states and territories.
TRANScend support has been critical to helping FLAS maintain its services. In 2020, in the midst of the COVID pandemic, Gilead’s funding helped FLAS continue to offer virtual behavioral and mental health services to the community when their physical offices had to close.
According to Chino, this type of partnership is critical to ending the HIV epidemic in Latino communities, especially for meeting communities where they are.
“Communities trust their grassroots organizations, and grassroots organizations provide for their communities,” she says. “At the end of the day, we need to continue to support the groups doing the difficult work on the ground with the people they’re serving, especially those breaking down stigma and lasting barriers to care for Latino communities.”
AIDS and HIV
40th anniversary AIDS Walk happening this weekend in West Hollywood
AIDS Project Los Angeles Health will gather in West Hollywood Park to kick off 40th anniversary celebration
APLA Health will celebrate its 40th anniversary this Sunday at West Hollywood Park, by kicking off the world’s first and oldest AIDS walk with a special appearance by Salina Estitties, live entertainment, and speeches.
APLA Health, which was formerly known as AIDS Project Los Angeles, serves the underserved LGBTQ+ communities of Los Angeles by providing them with resources.
“We are steadfast in our efforts to end the HIV epidemic in our lifetime. Through the use of tools like PrEP and PEP, the science of ‘undetectable equals intransmissible,’ and our working to ensure broad access to LGTBQ+ empowering healthcare, we can make a real step forward in the fight to end this disease,” said APLA Health’s chief executive officer, Craig E. Thompson.
For 40 years, APLA Health has spearheaded programs, facilitated healthcare check-ups and provided other essential services to nearly 20,000 members of the LGBTQ+ community annually in Los Angeles, regardless of their ability to pay.
APLA Health provides LGBTQ+ primary care, dental care, behavioral healthcare, HIV specialty care, and other support services for housing and nutritional needs.
The AIDS Walk will begin at 10AM and registrations are open for teams and solo walkers. More information can be found on the APLA Health’s website.
AIDS and HIV
Cautious Optimism in San Francisco as New Cases of HIV in Latinos Decrease
The decrease could mark the first time in five years that Latinos haven’t accounted for the largest number of new cases
SAN FRANCISCO — For years, Latinos represented the biggest share of new HIV cases in this city, but testing data suggests the tide may be turning.
The number of Latinos newly testing positive for HIV dropped 46% from 2022 to 2023, according to a preliminary report released in July by the San Francisco Department of Public Health.
The decrease could mark the first time in five years that Latinos haven’t accounted for the largest number of new cases, leading to cautious optimism that the millions of dollars the city has spent to remedy the troubling disparity is working. But outreach workers and health care providers say that work still needs to be done to prevent, and to test, for HIV, especially among new immigrants.
“I am very hopeful, but that doesn’t mean that we’re going to let up in any way on our efforts,” said Stephanie Cohen, who is the medical director of the city’s HIV and STI prevention division.
Public health experts said the city’s latest report could be encouraging, but that more data is needed to know whether San Francisco has addressed inequities in its HIV services. For instance, it’s still unclear how many Latinos were tested or if the number of Latinos exposed to the virus had also fallen — key health metrics the public health department declined to provide to KFF Health News. Testing rates are also below pre-pandemic levels, according to the city.
“If there are fewer Latinos being reached by testing efforts despite a need, that points to a serious challenge to addressing HIV,” said Lindsey Dawson, the associate director of HIV Policy and director of LGBTQ Health Policy at KFF, a health information nonprofit that includes KFF Health News.
San Francisco, like the rest of the country, suffers major disparities in diagnosis rates for Latinos and people of color. Outreach workers say that recent immigrants are more vulnerable to infectious diseases because they don’t know where to get tested or have a hard time navigating the health care system.
In 2022, Latinos represented 44% of new HIV cases in San Francisco, even though they accounted for only 15% of the population. Latinos’ share of new cases fell to 30% last year, while whites accounted for the largest share of new cases at 36%, according to the new report.
Cohen acknowledged a one-year decline is not enough to draw a trend, but she said targeted funding to community-based organizations may have helped lower HIV cases among Latinos. A final report is expected in the fall.
Most cities primarily depend on federal dollars to pay for HIV services, but San Francisco has an ambitious target to be the first U.S. city to eliminate HIV, and roughly half of its $44 million HIV/AIDS budget last year came from city coffers. By comparison, New Orleans, which has similar HIV rates, kicked in only $22,000 of its $13 million overall HIV/AIDS budget, according to that city’s health department.
As part of an effort to address HIV disparities among LGBTQ+ communities and people of color, San Francisco last year gave $2.1 million to three nonprofits — Instituto Familiar de la Raza, Mission Neighborhood Health Center, and San Francisco AIDS Foundation — to bolster outreach, testing, and treatment among Latinos, according to the city’s 2023 budget.
At Instituto Familiar de la Raza, which administers the contract, the funding has helped pay for HIV testing, prevention, treatment, outreach events, counseling, and immigration legal services, said Claudia Cabrera-Lara, director of the HIV program at Sí a la Vida. But ongoing funding isn’t guaranteed.
“We live with the anxiety of not knowing what is going to happen,” she said.
The public health department has commissioned a $150,000 project with Instituto Familiar de la Raza to determine how Latinos are contracting HIV, who is most at risk, and what health gaps remain. The results are expected in September.
“It could help us shape, pivot, and grow our programs in a way that makes them as effective as possible,” Cohen said.
The center of the HIV epidemic in the mid-1980s, San Francisco set a national model for response to the disease after building a network of HIV services for residents to get free or low-cost HIV testing, as well as treatment, regardless of health insurance or immigration status.
Although city testing data showed that new cases among Latinos declined last year, outreach workers are seeing the opposite. They say they are encountering more Latinos diagnosed with HIV while they struggle to get out information about testing and prevention — such as taking preventive medications like PrEP — especially among the young and gay immigrant communities.
San Francisco’s 2022 epidemiological data shows that 95 of the 213 people diagnosed at an advanced stage of the virus were foreign-born. And the diagnosis rate among Latino men was four times as high as the rate for white men, and 1.2 times that of Black men.
“It’s a tragedy,” said Carina Marquez, associate professor of medicine in the Division of HIV, Infectious Diseases, and Global Medicine at Zuckerberg San Francisco General Hospital, the city’s largest provider of HIV care. “We have such great tools to prevent HIV and to treat HIV, but we are seeing this big disparity.”
Because Latinos are the ethnicity least likely to receive care in San Francisco, outreach workers want the city to increase funding to continue to reduce HIV disparities.
The San Francisco AIDS Foundation, for instance, would like more bilingual sexual health outreach workers; it currently has four, to cover areas where Latinos have recently settled, said Jorge Zepeda, its director of Latine Health Services.
At Mission Neighborhood Health Center, which runs Clinica Esperanza, one of the largest providers of HIV care to Latinos and immigrants, the number of patients seeking treatment has jumped from about two a month to around 16 a month.
Among the challenges is getting patients connected to mental health and substance abuse bilingual services crucial to retaining them in HIV care, said Luis Carlos Ruiz Perez, the clinic’s HIV medical case manager. The clinic wants to advertise its testing and treatment services more but lacks the money.
“A lot of people don’t know what resources are available. Period,” said Liz Oates, a health systems navigator from Glide Foundation, who works on HIV prevention and testing. “So where do you start when nobody’s engaging you?”
This article was produced by KFF Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation.
KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.
Subscribe to KFF Health News’ free Morning Briefing.
AIDS and HIV
White House urged to expand PrEP coverage for injectable form
HIV/AIDS service organizations made call on Wednesday
A coalition of 63 organizations dedicated to ending HIV called on the Biden-Harris administration on Wednesday to require insurers to cover long-acting pre-exposure prophylaxis (PrEP) without cost-sharing.
In a letter to Chiquita Brooks-LaSure, administrator of the Centers for Medicare and Medicaid Services, the groups emphasized the need for broad and equitable access to PrEP free of insurance barriers.
Long-acting PrEP is an injectable form of PrEP that’s effective over a long period of time. The FDA approved Apretude (cabotegravir extended-release injectable suspension) as the first and only long-acting injectable PrEP in late 2021. It’s intended for adults and adolescents weighing at least 77 lbs. who are at risk for HIV through sex.
The U.S. Preventive Services Task Force updated its recommendation for PrEP on Aug. 22, 2023, to include new medications such as the first long-acting PrEP drug. The coalition wants CMS to issue guidance requiring insurers to cover all forms of PrEP, including current and future FDA-approved drugs.
“Long-acting PrEP can be the answer to low PrEP uptake, particularly in communities not using PrEP today,” said Carl Schmid, executive director of the HIV+Hepatitis Policy Institute. “The Biden administration has an opportunity to ensure that people with private insurance can access PrEP now and into the future, free of any cost-sharing, with properly worded guidance to insurers.”
Currently, only 36 percent of those who could benefit from PrEP are using it. Significant disparities exist among racial and ethnic groups. Black people constitute 39 percent of new HIV diagnoses but only 14 percent of PrEP users, while Latinos represent 31 percent of new diagnoses but only 18 percent of PrEP users. In contrast, white people represent 24 percent of HIV diagnoses but 64 percent of PrEP users.
The groups also want CMS to prohibit insurers from employing prior authorization for PrEP, citing it as a significant barrier to access. Several states, including New York and California, already prohibit prior authorization for PrEP.
Modeling conducted for HIV+Hep, based on clinical trials of a once every 2-month injection, suggests that 87 percent more HIV cases would be averted compared to daily oral PrEP, with $4.25 billion in averted healthcare costs over 10 years.
Despite guidance issued to insurers in July 2021, PrEP users continue to report being charged cost-sharing for both the drug and ancillary services. A recent review of claims data found that 36 percent of PrEP users were charged for their drugs, and even 31 percent of those using generic PrEP faced cost-sharing.
The coalition’s letter follows a more detailed communication sent by HIV+Hepatitis Policy Institute to the Biden administration on July 2.
Signatories to the community letter include Advocates for Youth, AIDS United, Equality California, Fenway Health, Human Rights Campaign, and the National Coalition of STD Directors, among others.
Advocates, councilmembers and students are mobilizing for Prop 50 around the city
New book a fun travelogue, memoir focused on cemeteries
Murphy’s ‘Monster’ returns for a flawed but fascinating third round
Jennifer Lopez talks ‘Kiss of the Spider Woman,’ queer representation
Escaping the party culture: Why more LGBTQ+ people are choosing sobriety and utilizing ketamine therapy
Jennifer Lopez talks ‘Kiss of the Spider Woman,’ queer representation
Murphy’s ‘Monster’ returns for a flawed but fascinating third round
Advocates, councilmembers and students are mobilizing for Prop 50 around the city
New book a fun travelogue, memoir focused on cemeteries
-
a&e features5 days agoJennifer Lopez talks ‘Kiss of the Spider Woman,’ queer representation
-
Out & About3 days agoMurphy’s ‘Monster’ returns for a flawed but fascinating third round
-
West Hollywood8 hours agoAdvocates, councilmembers and students are mobilizing for Prop 50 around the city
-
Books2 days agoNew book a fun travelogue, memoir focused on cemeteries